NBIA Disorders AssociationNBIA Disorders Association

Mission Statement

In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world. Neurodegeneration with Brain Iron Accumulation (NBIA) disorders are a collection of 10 identifi... Read more

Causes

Volunteer with us!We have

Here's a sample of our volunteer opportunities:

Mission Statement

In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world. Neurodegeneration with Brain Iron Accumulation (NBIA) disorders are a collection of 10 identified conditions all sharing the characteristic of excessive iron in the brain. The disorders have profound impact on those affected, and their families. They are ultra-rare disorders, affecting 1-3 people per million.

Description

Founded in 1996, the organization conducts a variety of services in support of families while furthering research by granting funds, primarily raised by families affected by the disorders.

Goals:

To provide a supportive environment in which people affected by NBIA and their loved ones can share needs, concerns and experiences.

To share up-to-date information about treatment and care options with all members of the NBIA community.

To increase recognition of NBIA among clinicians and other healthcare professionals and promote early diagnosis and access to optimal care.

To participate effectively in the international NBIA community and foster collaboration with our affiliated NBIA lay advocacy groups in other countries.

To build an expanding base of committed contributors who will help provide funds to achieve our vision.

To encourage, guide and fund research to improve understanding, diagnosis and treatment, and ultimately, find a cure for NBIA disorders.